Eating disorder/ ocd/ autism

Hi- I am autistic and I have struggled with food/eating for a long time now though for me weight is not the concern (more related to digestive issues, love for routine, eating same food over and over, anxiety etc.). Sadly, eating disorders are often still quite poorly understood and handled and in my experience there is even less understanding for autistic people that struggle with eating and therapies are not tailored to our needs. My eating issues were very poorly handled by some professionals which caused a lot of damage- I'm not saying this to scare or discourage you but I just want to protect other people from undergoing the same. 

It can be particularly hard to recover from an eating disorder when you have ocd-like tendencies, are anxious about change and love routines, all of which are common amongst autistic people. Right now it sounds like the obsessions/routine of your daughter is focused on loosing weight and it sounds like she is restricting calories (and she possibly has some more defined rules about this eg. a certain number of calories that cannot be exceeded or that must be hit exactly. Is she maybe avoiding certain food groups? There could be rules about timings of meals etc.). The issue is that these rules/obsessions around food can become replaced with new rules/obsessions and the way that treatment for eating disorders is delivered can often facilitate this. An example of this would be that the obsession could be to gain weight, or to hit a certain number of calories, or that 'you have to have dessert every meal' etc or it could be 'I have to always finish the plate' or ' I have to have exactly 3 meals and 3 snacks each day'. Which in the short term might be preferable and good to restore nutrition and weight but in the long term causes problems. I had professionals which very much encouraged eating foods considered to be 'unhealthy'/ junk food (eg. cakes, pizzas, etc) for recovering whilst at the same time suggesting that if I craved a healthier option (eg. rice with a stirfry, fruit or vegetables etc) this was disordered. For me this was very damaging and I essentially got stuck on only allowing myself to eat highly processed foods, plus binging as I was so desperate to gain weight. I believe that anyone recovering from an eating disorder has a right to eat healthily which includes whole foods as well as treats. I would be vary of any dietitian that is taking the 'junk food' approach to weight gain. I also think it is very important to take a nuanced approach as otherwise it's easy to just become trapped in a new set of food related obsessions. 

You mention the constant worrying and being stressed - this is probably a key part of the issue- so any tools that can help reduce this are likely to help. Being with horses and outdoors used to help me a lot (I actually used to ride a lot growing up)- It makes me so mad though to hear about what the owner said to your daughter. 

I feel like I haven't really been able to give any useful advice yet. It's a bit difficult to know how to best raise your concerns with your daughter- It's likely she will become defensive / deny it if you directly raise your concerns about her eating with her which could have negative repercussions. But at the same time, it's important that she gets help. The first step to making any changes in terms of food/eating is to acknowledge yourself that there is an issue. It takes a lot of courage and it results in a lot of anxiety to make changes so you have to want it. 

It might be a good idea to look at the BEAT website and to ring their helpline for some advice: It's free and they are great and very experienced and will be able to send you resources that could be useful: The UK's Eating Disorder Charity - Beat (beateatingdisorders.org.uk) 

I can also highly recommend my dietitian. She is really the only person that has been able to make a positive impact on my eating and general well being (and I tried various therapists and tried with various eating disorder services (where I had a very bad experience- though maybe that was unlucky and maybe also I do not have one of the typical eating disorders (such as anorexia nervosa or bulimia or binge eating disorder), which these services are more equipped to deal with).). My dietitian has a lot of experience in helping autistic patients and she is actually the person that realised I might be autistic (which then resulted in me being referred and ultimately diagnosed). It is very expensive though: home | dalia weinreb (dalianutrition.com) . She might also be able to point you towards some more resources. 

Also in case you haven't found it already, the NAS has a great page on eating issues and autism. It's one of the best summaries of the overlap that I have found so far: Eating - a guide for all audiences (autism.org.uk)

I will have a think and write again if I think of anything else that could be helpful- I was just about to go to bed but I really wanted to reply when I saw this post. Also if there are any more specific questions you have, I'm happy to share more about my own experiences with eating issues (I wasn't sure how relevant it is as for me the main concern is not about weight, but I can very much relate to the anxiety and ocd-type issues). 

I am sending you a lot of strength. Best, 

Ann 

Hi- I am autistic and I have struggled with food/eating for a long time now though for me weight is not the concern (more related to digestive issues, love for routine, eating same food over and over, anxiety etc.). Sadly, eating disorders are often still quite poorly understood and handled and in my experience there is even less understanding for autistic people that struggle with eating and therapies are not tailored to our needs. My eating issues were very poorly handled by some professionals which caused a lot of damage- I'm not saying this to scare or discourage you but I just want to protect other people from undergoing the same. 

It can be particularly hard to recover from an eating disorder when you have ocd-like tendencies, are anxious about change and love routines, all of which are common amongst autistic people. Right now it sounds like the obsessions/routine of your daughter is focused on loosing weight and it sounds like she is restricting calories (and she possibly has some more defined rules about this eg. a certain number of calories that cannot be exceeded or that must be hit exactly. Is she maybe avoiding certain food groups? There could be rules about timings of meals etc.). The issue is that these rules/obsessions around food can become replaced with new rules/obsessions and the way that treatment for eating disorders is delivered can often facilitate this. An example of this would be that the obsession could be to gain weight, or to hit a certain number of calories, or that 'you have to have dessert every meal' etc or it could be 'I have to always finish the plate' or ' I have to have exactly 3 meals and 3 snacks each day'. Which in the short term might be preferable and good to restore nutrition and weight but in the long term causes problems. I had professionals which very much encouraged eating foods considered to be 'unhealthy'/ junk food (eg. cakes, pizzas, etc) for recovering whilst at the same time suggesting that if I craved a healthier option (eg. rice with a stirfry, fruit or vegetables etc) this was disordered. For me this was very damaging and I essentially got stuck on only allowing myself to eat highly processed foods, plus binging as I was so desperate to gain weight. I believe that anyone recovering from an eating disorder has a right to eat healthily which includes whole foods as well as treats. I would be vary of any dietitian that is taking the 'junk food' approach to weight gain. I also think it is very important to take a nuanced approach as otherwise it's easy to just become trapped in a new set of food related obsessions. 

You mention the constant worrying and being stressed - this is probably a key part of the issue- so any tools that can help reduce this are likely to help. Being with horses and outdoors used to help me a lot (I actually used to ride a lot growing up)- It makes me so mad though to hear about what the owner said to your daughter. 

I feel like I haven't really been able to give any useful advice yet. It's a bit difficult to know how to best raise your concerns with your daughter- It's likely she will become defensive / deny it if you directly raise your concerns about her eating with her which could have negative repercussions. But at the same time, it's important that she gets help. The first step to making any changes in terms of food/eating is to acknowledge yourself that there is an issue. It takes a lot of courage and it results in a lot of anxiety to make changes so you have to want it. 

It might be a good idea to look at the BEAT website and to ring their helpline for some advice: It's free and they are great and very experienced and will be able to send you resources that could be useful: The UK's Eating Disorder Charity - Beat (beateatingdisorders.org.uk) 

I can also highly recommend my dietitian. She is really the only person that has been able to make a positive impact on my eating and general well being (and I tried various therapists and tried with various eating disorder services (where I had a very bad experience- though maybe that was unlucky and maybe also I do not have one of the typical eating disorders (such as anorexia nervosa or bulimia or binge eating disorder), which these services are more equipped to deal with).). My dietitian has a lot of experience in helping autistic patients and she is actually the person that realised I might be autistic (which then resulted in me being referred and ultimately diagnosed). It is very expensive though: home | dalia weinreb (dalianutrition.com) . She might also be able to point you towards some more resources. 

Also in case you haven't found it already, the NAS has a great page on eating issues and autism. It's one of the best summaries of the overlap that I have found so far: Eating - a guide for all audiences (autism.org.uk)

I will have a think and write again if I think of anything else that could be helpful- I was just about to go to bed but I really wanted to reply when I saw this post. Also if there are any more specific questions you have, I'm happy to share more about my own experiences with eating issues (I wasn't sure how relevant it is as for me the main concern is not about weight, but I can very much relate to the anxiety and ocd-type issues). 

I am sending you a lot of strength. Best, 

Ann